Bye bye 2018, Hello 2019

We're into the last 4 hours of 2018... Apart from the last 2 months, it's been a pretty great year for the most part. My 2018 New Years Resolutions were as follows:

• Take part in the National Transplant Games in PE in July (and hopefully go on to qualify for the 2019 WTG). DONE! And I qualified for squash... but then I tore the Achilles twice and now that dream is down the drain.
• Travel as much as I can, including at least one overseas trip. DONE! Did 2 overseas trips and a few local ones.
• Take my fitness above where it was at it's peak after my previous transplant. The years of rejection has made me value the capabilities of these lungs and what my body can do (given enough lung-power and training), even more. DONE! But at the peak of my fitness I tore the Achilles and now I'm back to being unfit with MONTHS of recovery laying ahead.
• Figure our working/ LLGL/ my life and priorities. DONE. More about the LLGL part a bit later, but yes, everything is sorted out now.

So I managed to achieve everything I wanted to.... technically. I'll figure out some new ones for 2019 soon. 

The highlights were definitely the holidays we took. Ballito, Eastern Cape, Mauritius, New York City, Two brief Cape Town Trips.

Starting to work for my friend Andrew has also been a highlight... the perfect job for me in so many ways. Seeing my nephew Adriaan grow a year older was also amazing. 

Another highlight was the fact that I had NO LUNG PROBLEMS the entire year. I had a bad reaction to two of my medications in May, and the Achilles drama recently, but no lung drama. And today marks 14 months with the new new lungs. So that's undoubtedly a highlight.

Fawn, Bonnie and I got to launch our new organ donation NPO called TELL, and we had a fantastic launch function. I believe we have the potential to achieve fantastic things, and I love working with everyone involved.

The lows... Pretty much right now. I've been sitting with my leg up for the last 2 weeks and I'm pretty damn frustrated. I'm going to end up having spent 3 months in a cast. I'm pretty depressed about not being able to play squash again, and I don't know how well these injuries will even recover to allow me to at least jog a bit again. My google searches have said about 6 months to be able to WALK normally again, and a year to recover "in full"... although it never FULLY recovers. I can however start swimming and some cycling sooner. But basically my tendons are clearly weak and I will need to take that into consideration forever. (I also need to have my bone density checked again early in the new year, because all I need now is to break a bone as well... courtesy of the lovely steroids too. 

The other low was the demise of Love Life; Gift Life, and the terrible conflicts that came with it. I've never experienced anything like it, and I still think about it with sadness, bitterness and disbelief. It's not even over yet, as the NPO is not legally dissolved yet, so undoubtedly even more crap awaits. I CANNOT WAIT for it to be over for good. And to focus all of that energy on TELL.

So that was the year in a nutshell. Spending New Years eve doing nothing, because it's too much effort to go out and I won't enjoy it. Hope you have a great 2019.

One sleep till we get on a plane to New York City and WEGO Health Awards!

The time has finally arrived for our trip to New York! We're soooooo bloody excited! Already checked in for the flights on Emirates. A year ago this time I would have never imagined that we would be off on this awesome adventure right now. I've been lying awake in the early hours of the morning for the last new nights, just in awe of how my health is feeling so fantastic right now, and how brilliant my breathing is, how much energy I have compared to a year ago... how almost everything in life is just SO MUCH BETTER when you can breathe. There is a quote that says "When you can't breathe, nothing else matters." This is so absolutely true! And when you CAN breathe, so much in life just gets magically better! I really hope that everyone I know waiting for a transplant may also get to experience this feeling one day.

I am excited to announce that I have been nominated for the WEGO Health "Patient Leader Hero" and "Best in show: Blog" Awards in the 2018 WEGO Health Awards. I don't know who nominated me in these 2 categories, but THANK YOU!

WEGO Health is a mission-driven company connecting health care with the experience, skills, and insights of patient leaders. They are the world’s largest network of patient leaders, working across virtually all health conditions and topics.

The WEGO Health Awards were created to celebrate those who tirelessly support the mission of WEGO Health: to empower the patient voice. With 16 award categories, the WEGO Health Awards are the only awards across all conditions and platforms, that recognize the over 100 thousand inspiring Patient Leaders who raise awareness, share information, and support their communities - but often without recognition. This year, the 16 WEGO Health Award winners will be honored at an in-person celebration in October co-hosted by the Society of Participatory Medicine at the Connected Health Conference. (Not that I'll be able to attend, as it's in the USA!)

There are two easy ways to endorse that only take seconds of your time!

1) You can click on my endorsement badge located at the top right part of my blog.
2) Click here to be taken to my WEGO Health Awards profile where you can click “Endorse” under my nominee photo.

This past weekend was very social! Two of my university friends were in town for a Katy Perry concert, so had some great catching up sessions!

Hope you have a great weekend... and please bear with me when I break your Instagram and Facebook with pics of our trip!! 

6 Months with the new new lungs, and 2 AMAZING trips in the pipeline.

Can you believe it's been half a year since I became the incredibly blessed owner of these beautiful lungs??? Half a year of no more oxygen, of not worrying about the time left on my portable oxygen's battery. Half a year of no lung infections. No PICC lines for IV antibiotics, not having to keep my phone on 24/7, always WAITING. Half a year of no rejection in my lungs. Of getting stronger. Your personality starts coming back... you're not YOU when you struggle to breathe... "When you struggle to breathe, nothing else matters." Truest quote ever.

The biggest freedom of having your life back is being able to MAKE PLANS and TRAVEL again. It's what I missed most while being on the waiting list, and even before that. The last proper holiday we had was in 2015 when my lung function was 45% on a good day. It was 39% just a few weeks before that trip and I was freaking out. Luckily it bounced back a little again.

This year in contrast, is the YEAR OF TRAVEL!!!!! In 19 days' time Chris and I, along with Andrew, Brendan, Marius, Ditha and Riaan, will be flying to Mauritius!!! (It's an island close to Madagascar, if you didn't know. Very popular with South Africans). The idea originated last year. The deal was that if I get new lungs, we all go to Mauritius!!!! We stuck to it, and on 20 May we'll be flying out! We'll be staying in a resort called Riu Creole, in the South West of the island. (Picture of the resort below). Can't believe it's less than 3 weeks away!

Then, the most amazing trip planned is NEW YORK!!!! That one has been on my bucket list since I knew what a bucket list was! Ever since we watched Friends in high School, I have wanted to go there. Well, in 87 sleeps IT'S HAPPENING!!!! I'm dreaming about it at night already! Busy studying guidebook, starting to plan our days... we will be staying in an AirBNB apartment for 13 nights, and my Vitality Diamond status is FINALLY paying off, giving me a 35% discount on flights! Whoopwoop!

Last week my sis and I went to see The Sound of Music at Monte Casino. It was really great. I wasn't a big fan of the male lead, but the rest of the cast was brilliant.

On Sat morning my sis and I also went to the semi-annual Kamers event, where a lot of jewellery/ clothes/ arts/crafts makers get together in JHB. It was very nice, didn't get as much time there as we wanted to, but it's a blessing for my wallet! On Saturday afternoon Brendan, Marius, Andrew and us drove to Secunda to visit Cecile and Dean! It was very nice catching up with them... Secunda is REALLY not a great town though! Pretty depressing and full of air pollution! But it's always great catching up with Cecile and Dean and baby Ben!

Don't have much planned yet for the rest of the week. Need to get some meds, sort out some follow-up Dr's appointments, and hoping to shake off a tummy bug that I seem to have! Hope you had a great long-weekend!

Fitness declaration, dreams and nostalgia

Today I miss exercising a lot. Intense exercise, not the sad weight-lifting that I currently do. Spinning, playing squash, running... It's been 4 years since I've been able to do this properly. Four years of gradual deterioration. Preceded by 5.5 years of the most amazing breathing ability ever known to myself. I miss it SOOOO MUCH and wish I had worked harder at my fitness when I had the chance. It wasn't easy with working full-time, but I wish I pushed myself harder. I should have played more squash, done more spinning classes, just more of EVERYTHING CARDIO. 

There is nothing like the feeling of your lungs FILLING with air, and your heart beating, not because you climbed a flight of stairs and want to pass out, but because you are ALIVE and MOVING. I think it's taken me 23.5 years of shitty breathing, those 5.5 years of brilliant breathing, and these 4 years of losing it again to totally appreciate and realise how brilliant it is and how it should never be taken for granted. 

If I ever get the opportunity to breathe freely with healthy lungs again, I will make it my goal to push my body to its physical limits. I will try new activities, I will join a squash club... I want to run further than before. I want to do spinning again! I want to SWEAT! I am able to do so little at a time now, that I haven't sweated properly in AGES (except when my blood sugar drops too low, but that's a whole different topic!). I swear there will be no stopping me... 

This is what I dream of... it keeps me motivated. It pushes me to do what little I can right now. One day I will escape this frustrated feeling... one way or another. Until then these daydreams (and sometimes actual dreams at night) will keep me going. Patience... it will be worth it.

Bucket-list item... craving a swim in the sea

So I haven't been on the beach in my bikini since early Dec 2014 (and that was just one day in Cape Town... not a beach holiday). Before that was in April 2013 in PE (also only one day swimming in the sea, 2 days on the beach) ... and that's the last time I swam in the sea. To say I miss it is an understatement. I regret not making more of an effort to get to the sea in these last few years while my lungs have been slowly fading away. Unfortunately leave from work was limited, and we maximised that time by going to San Fran and other "bush" holidays not involving the beach.

As soon as I'm able to one day, I think a trip to the Durban-side of the world will be in order... only a 6 hour drive away and the sea is nice and warm. I used to go to the beach almost daily growing up in summer. There is nothing like the sound of the beach... the feeling of coming up after the first time you dunk your whole body under the waves. Collapsing down on your towel breathless (because you exercised, not because you put on a pair of skinny jeans) after a long time playing in the waves, feeling the sun beat down on you. Obviously now I'm older and wiser and immune suppressed so unlike trying to tan as a teen, I will be lathered in SPF 50! There is also is certain type of appetite that only a few hours in the sun, sand and sea invokes. We always scoffed down cookies and tea, biltong or Salticrax when we were back home, after taking a bath to get all the sand off!

These pics are all from the last beach visit in Dec 2014. I did get rather out of breath but nothing like I would now (right now I would collapse and drown as soon as one wave hits me LOL).